Resources

Below you will find links to articles and other resources on the topics of insurer and law enforcement use of genetic information from a variety of perspectives. Many of these articles are publicly available, although a handful may be behind paywalls.

Insurer Use of Genetic Information:

• Organizations and Websites:

  
  American Council of Life Insurers (ACLI), Q&A: Life Insurance Companies and Genetic Information
  Industry information regarding life insurer use of genetic information
  
• Facing our Risk of Cancer Empowered (FORCE)
  An advocacy organization calling for increased protections against genetic discrimination
  
• Genetic Discrimination Observatory
  An international collaboration of researchers focused on genetic discrimination
  
• National Human Genome Research Institute (NHGRI), Genetic Discrimination (January 2022)
  Federal government information regarding federal protections of genetic information
  

• Readings:

  
  Jarrod O. Anderson, Anna C. Lewis & Anya E. Prince, The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information, 22 DePaul J. Health Care L. (2021)
  A 50-state survey (completed in 2021) mapping state regulation of life, long-term care, and disability insurer use of genetic information
  
• Patricia Born, Genetic Testing in Underwriting: Implications for Life Insurance Markets , Journal of Insurance Regulation (2019)
  An article assessing the potential impacts of life insurer use of genetic information
  
• Kristen V. Brown, Genetic Discrimination is Coming for Us All, The Atlantic (November 12, 2024)
  A news article highlighting cases of genetic discrimination by life, long-term care, and disability insurers
  
• Dexter Gollinghorst, et al, Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective, Journal of Law, Medicine & Ethics (2022)
  An article interrogating claims of adverse selection if insurers cannot have access to genetic information
  
• Anna C.F. Lewis, Robert C. Green, & Anya E.R. Prince, Long-awaited progress in addressing genetic discrimination in the United States, 23 Genetics in Medicine 429 (2021)
  An article discussing Florida’s 2020 law barring life, long-term care, and disability insurer use of genetic information
  
• Anya E.R. Prince, The Genetic Information Privacy Act: Drawbacks and Limitations, 330 JAMA 2049 (2023)
  An article discussing the Genetic Information Privacy Act, a model law that many states have passed in an attempt to shore up genetic privacy, and the limits of these laws in the context of insurance and law enforcement.
  

Law Enforcement Use of Genetic Information:

• Organizations, Websites, & Non-Governmental Policy Statements:

  
  U.S. Department of Justice, Interim Policy: Forensic Genetic Genealogical DNA Analysis and Searching (2019)
  A federal policy document setting forth how forensic investigative genetic genealogy (“FIGG”) shall be conducted by investigative agencies within the Department of Justice (e.g., the FBI) and other entities receiving grants funds used for FIGG.
  
• Future of Privacy Forum (FPF), Privacy Best Practices for Consumer Genetic Testing Services (2018)
  Best practice guidance document developed by industry (23andMe, Ancestry, Helix, MyHeritage, and Habit), in cooperation with the Future of Privacy Forum
  
• Electronic Frontier Foundation (EFF), Biometrics
  A non-profit organization litigating and advocating for increased protection of biometric data, including genetic data
• Investigative Genetic Genealogy Accreditation Board (IGGAB)
  A organization that has developed professional standards and administers an accreditation examination for FIGG practitioners

• Readings:

  
  Mike Baker, To Identify Suspect in Idaho Killings, F.B.I. Used Restricted Consumer DNA Data, N.Y. Times (February 25, 2025
  A news article reporting that the FBI violated its own policy governing FIGG in investigating the murders of University of Idaho students.
  
• Teneille R. Brown, Why We Fear Genetic Informants: Using Genetic Genealogy to Catch Serial Killers, 21 Colum. Sci. & Tech. L. Rev. 118 (2020)
  A law review article arguing that, rather than limiting law enforcement use of consumer genetic data, regulation should focus on more broadly improving user consent processes and more transparent privacy and security measures
  
• Christi J. Guerrini, et al., Four Misconceptions About Investigative Genetic Genealogy, J. Law & Biosciences., doi: 10.1093/jlb/lsab001 (2021)
  An article explaining how FIGG works and addressing some common misunderstandings about this practice
  
• Christi J. Guerrini, et al., Investigative Genetic Genealogy Practices Warranting Policy Attention: Results of a Modified Policy Delphi, PLoS Genetics, doi: 10.1371/journal.pgen.1011520 (2025)
  An article reporting the results of structured discussions among experts across professions relevant to FIGG identifying and prioritizing FIGG practices for policy attention and developing policy options for addressing them
  
• Christi Guerrini, et al., State Genetic Privacy Statutes: Good Intentions, Unintended Consequences?, Bill of Health (August 10, 2023)
  A commentary expressing concern that some state Genetic Information Privacy Acts may inadvertently regulate FIGG in unexpected ways that may hamper or prevent its use.
  
• Natalie Ram, Erin E. Murphy, & Sonia M. Suter, Regulating Forensic Genetic Genealogy, 373 Science 1444 (2021)
  An article describing Maryland’s law regulating law enforcement use of consumer genetic data and describing key elements of the law that make it a model for future lawmaking
  
• Sonia M. Suter, Erin E. Murphy, & Natalie Ram, Maryland Can Be a Model for Regulating Law Enforcement Use of Genetic Databases, The Washington Post (June 18, 2021)
  A news article discussing the recent Maryland law regulating law enforcement use of consumer genetic information